Relieve Chronic Pain - Steven Phillips, M.D. & Dana Parish | The Empowering Neurologist EP. 118

I left the city, went to a wedding in New Jersey, came back with a flu-like illness 2 days later. Saw a bite on my shoulder, very fortunate, in the rare minority that see the bite. Walked over to the urgent care, got 3 weeks of antibiotics. They said, you will be fine. Don't Google it. If you Google it, you'll get alarmed and you'll see all these crazy Lyme people.

Well, hello everyone. I'm Dr. David Perlmutter. And to The Empowering Neurologist. In America right now, there are more than 50 million people who've been diagnosed with one form of autoimmune disease or another. And these are things like rheumatoid arthritis, systemic lupus erythematosus, multiple sclerosis, celiac disease, for example, type 1 diabetes. So these diseases are very, very prevalent and they are a manifestation of lack of regulation of the immune system. Whereas Normally the immune system's in balance. In the case of an autoimmune condition, the immune system actually reacts against our own tissues, and that is obviously not a favorable situation. The diseases are generally treated by immunosuppressant medication, medications that are designed to turn down the function of the immune system, which might not always be an ideal situation. So we have to take a step back and ask ourselves, well, why is it happening? Why does such a large percentage of our population suffer from an autoimmune condition. And people have been puzzling over this for many, many years. And more recently, it has become at least theoretical that some form of underlying infection may relate to the changes in the immune system that are so characteristic of these diseases. We have a new book out. It's called Chronic by Steven Phillips, MD, also Dana Parrish. And here is the book, really kind of groundbreaking because what they've done, and it's an interesting combination, these 2 authors, I'll tell you about that in just a moment. What they have done is really done a great job to look at the science that demonstrates that having some form of underlying infection, things like Lyme disease, for example, can ultimately play upon the regulation of the immune system and then manifest in all kinds of ways. So we are gonna explore what these authors are talking about, what it means for us, what it means for diagnosis, what it means for treatment for so many individuals who are suffering from these kinds of diseases. Let me first tell you a little bit about the authors. Stephen Phillips is an MD and he is a Yale-trained physician. He's a researcher and he lectures internationally on this topic. The media goes to him when there's a question about chronic diseases, chronic infection, like Lyme disease, and he specializes in the management of these complex, what are called vector-borne infections, and we're gonna define that later on in the program. He is the co-author of this book, Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again, and he is currently in private practice in Wilton, Connecticut. The other author is Dana Parrish. She is an award-winning Sony ATV singer-songwriter. She's collaborated with the likes of Celine Dion, Michael Jackson, and Nick Jonas, and she, because her experiences has become a powerful voice for change in the field of Lyme disease. She is, as I mentioned, a co-author of this book and will explore with us today her experiences. She is actually a patient of Stephen Phillips, and we're going to talk about that relationship in just a minute. We're looking very much forward to this very, very interesting topic, this very interesting book that is certainly timely, that's for sure. Dana and Stephen, welcome to the program.

Thank you so much.

Thanks for having us.

This is a unique situation. We have doctor and doctor's patient. Each of you has an interesting story to tell, and how wonderful that our viewers today are gonna get both of these perspectives, 'cause, you know, they're gonna resonate with both views, and many of them are patients. Stephen, I'd like to start off with you. The book begins with a pretty profound statistic that there are 50 million individuals in America who are suffering with autoimmune conditions of various types, be it MS, Rheumatoid, lupus, you name it. And, you know, your contention throughout the book is that one significant possibility in terms of underlying these conditions is that these people may be infected with something. So I'd like to start off with, you can just explain, if you will, what was the revelation? How did you come about to finally hypothesize this? And Where do we go from here?

It came in layers. When I was in med school, I knew 8 people on my block that had Lyme disease and there were only 3 cases reported to the whole county at that time. I knew immediately there was some disconnect in terms of Lyme. Then when I went to— throughout residency, I was doing research on Lyme. When I graduated from residency, I realized that my father may have Lyme. My father was suffering from dilated cardiomyopathy, so end-stage heart failure. He was seen by doctors for 20 years and nobody can help him and he went To every major teaching center in New York City and ended up with end-stage heart failure, and the next step was transplant. Dilated cardiomyopathy is a heart condition that Lyme can cause. To make a long story short, he ended up having Lyme and ended up getting treated and having his heart function fully restored to normal, never needing the heart transplant. That's what galvanized my path looking at weird infections causing chronic illness. Little did I know that I would go on to become a patient myself. And that further kind of made my focus just—

Well, from the description of the book, you were pretty darn ill. You know, at one point I was very surprised as you were as sick as you were, the next sentence says, you know, and then when I would come home from the office each day, 'cause I cannot imagine that you were even able based on your description to go to work, you were in bad shape. And you started off that section by saying that you were always athletic, you did well in school, And then you were just sort of down for the count. What finally led you to somebody, and if you can describe what that was like, who could finally put you back on the road to recovery?

Well, I wish I found someone except for myself. What happened was I was sleeping in bed, I got spider bites. Within 2 months of the spider bites, my body exploded with arthritis everywhere. It spread to every joint, including my spine. And I went to 25 doctors, including 3 rheumatologists. And my diagnoses were rheumatoid arthritis and spondylitis, arthritis of the spine. None of that made sense to me. Before that, I could run 5 miles. To make, again, a long story short, I became profoundly ill. My patients were helping me to the exam room to do the examination. It was kind of like sad, pathetic. And I ended up giving up my practice. I lost 50 pounds. I couldn't turn over in bed on my own. I couldn't lift my arms against gravity. I had fevers, 102 every night. I, I literally almost died. I didn't just become disabled from my job, I became disabled from every aspect of life. I didn't, I didn't leave the house. And I figured it out actually in the last minute and saved my own life and my health. And I'm back to full health. I have a great full life. Before COVID I was traveling around the world giving talks, being really active and playing sports and all the good things that we should all do. But before this, my only options that were offered to me were rheumatologists wanting to give me Drugs to suppress my immune system for the rest of my life and didn't feel right.

Now, in understanding that there was an underlying infection here, those types of drugs that would suppress your immune system might well have made the situation much worse.

I think I would've died. I mean, one of the rheumatologists said to me, look, there are people who do die on these drugs. We all know that, but we get a lot of people to feel better. And she said, we as rheumatologists, we don't look at cause, we focus on effect. And if we can suppress your symptoms for the rest of your life, we call that a cure. And, you know, we got into a little tiff about it because I said, let's not call it a cure, call it what it is. I mean, you're suppressing symptoms and let's just agree to disagree about this because we weren't meeting eye to eye. And she kind of threw up her arms at me at one point and like, I don't know what to do with you. You won't take any of the drugs that I give you. And I was one of those problem patients, but you know what? I think you have to be, you have to follow your gut. And if something doesn't make sense, you have to question why. And so many patients don't question why.

I love the The statement about following your gut, you know, there, there's so many, uh, implications of that. Uh, you start getting better because you start treating yourself aggressively for this underlying infection. What do your doctors say at that point?

I went back to the 3 rheumatologists, um, and one of them was overjoyed that I got better. She was like seriously delighted and happy. The other one was skeptical, looked at my blood test, did a thorough exam, was like, well, I can't deny that you're so much better. And the other one just looked at me like I was a Martian. I mean, looked at me like, you're kidding. Like, this isn't even real. And I said to all of them, this is gonna change how you practice. You know, I'm not a one-off. You know, nature's not fickle. If this happens to me, then it's happening to your other patients that have rheumatic conditions, and maybe we should look into infection for them. And they're like, look, this is how I was trained. We're not changing. And it was just met by a brick wall.

I hear you so loud and clear. Been there so many times. If we have time, I'll tell you an interesting story that's quite similar. Dana, tell Tell us your story and how that whole thing unfolded.

Well, in the summer of 2014, I was living in Manhattan. I was literally living my dream life. I was in the music business and I had just gotten a really incredible deal with Sony Music. I had just written 2 songs for Celine Dion, was going to be on the road to writing for tons and tons of artists and superstars. I was so, so happy. I left the city, went to a wedding in New Jersey, came back with a flu-like illness, 2 days later, saw a bite on my shoulder, very fortunate, in the rare minority that see the bite, and a little bit of a rash around it. I grew up in New Jersey, so I knew that that was a hallmark of Lyme. I walked over to the urgent care, got 3 weeks of antibiotics. They said, you will be fine. Don't Google it. If you Google it, you'll get alarmed and you'll see all these crazy Lyme people. Now, I had never heard of a crazy Lyme person. I had no idea that this infectious disease was politicized the way it was and completely misunderstood and misrepresented. So I take the 3 weeks, my flu-like illness goes away, which it would anyway. 3 months later, I wake up, my whole body is haywire. My breast is swollen, it's extremely painful. I thought I had breast cancer. My internist sent me to an oncologist, he ruled that out. And then for the next 3 months, I went on to have roving, horrible, debilitating psychiatric and physical symptoms that led me to December when I couldn't breathe. Now, all along I'm seeing like 12 top New York City doctors from ID, rheumatology, internal medicine, oncology, sports medicine. I'm so weak I can't lift a fork. I have diagnosed with fibromyalgia, severe neuropsych illness. Literally overnight, my very good mental health went completely down the tubes and I can't sleep anymore. Fortunately, I couldn't breathe. I had an echocardiogram and I was in heart failure. That's when everybody kind of got scared and started believing me. Thankfully, a friend sent me to Dr. Phillips and he saved my life. Not only did he know that my Lyme was undertreated, he worked me up for other infections and found that I had another super common ubiquitous infection called Bartonella, cat scratch disease. Some people know it that way, and again, lots of misinformation. People think it's self-limiting; it's not serious. Well, it totally is serious in some cases, many cases, and it can kill you. And so he treated me. My heart failure was gone within about two months. All my neuropsych symptoms went away in three or four months completely. My body pain, literally every symptom. And I'm not on any drugs anymore. So it really upsets me that there are so many people that are relegated to long-term immune suppressants, as was going to happen to. To Dr. Phillips, and psychiatric drugs that they don't necessarily need. I'm not against people feeling better if that's what they need, so I don't wanna say you should never be on them, but for me, just treating the infections cured all of my symptoms.

Well, Dana, the common paradigm today is if you're diagnosed with Lyme disease, and we have to talk about how that happens, but if the doctor comes back into the room and says you have Lyme disease, the standard course of treatment is 3 weeks of an antibiotic, typically doxycycline or something like that, and then if that doesn't work, then there's Something else wrong with you, uh, that you— it might be psychological, or you've got issues at home that you have to deal with. How do you respond? Because that's how you were treated. Uh, that's how— correct me if I'm wrong, Stephen, but I think that's how most people are treated. But Dana, back to you. How do you respond to that mentality, which I think is pervasive?

Uh, it's completely anti-science. It's completely wrong, and it relegates millions of people around the world to dangerous drugs and a life of chronic illness that they don't have to suffer. That is absolutely true. And I don't care what anybody tells you. What I am telling you, what we present in this book, is the science is the reason. You can't tell me that all my symptoms that I had from day 1 to 21 on doxycycline, on day 22, are suddenly some other syndrome. That's nuts. If you look at the data according to Johns Hopkins, that treatment fails 39% of people. If you look at data from Danbury Hospital, it's 61%. Doxycycline does not cure Lyme in many, many, many cases and that's the end of the story.

The typical course of action, I guess, Stephen, for you is if you suspect as a treating physician that a patient has Lyme disease, you get the standard test, standard antibody study. How effective is that and what's the benefit? Why is that really— well, let's talk about how effective is that in actually making a diagnosis.

It's only really effective in Lyme arthritis, which is a small subset of patients. And people tend to think that arthritis is just joint pain all in different places, but Lyme arthritis is really the stereotypical thing. It's arthritis of the knee. And in those patients, they tend to have a positive screening test called ELISA and a positive Western blot. In patients with kind of multi-system illness, that's mainly neurologic, cardiac, et cetera, they tend not to. A meta-analysis of 8 studies out there showed that the tests were about 50% sensitive overall.

So when the CDC, in fact, as you described in your book, indicates that that type of testing will miss 90— correct me if I'm wrong, will catch only 10%, why is that still the standard of care?

So that is the surveillance criteria. So for many, many years, CDC surveillance criteria, they kept— they always said on their website, It's not appropriate for clinical diagnosis. And there's a reason. They have this very, very strict criteria and labs don't know what to do. So labs have been saying yay or nay, positive or negative based on CDC criteria. And there is one medical society, Infectious Disease Society of America, that strongly promotes diagnosis based on CDC surveillance criteria. But like I said, per the CDC's own caveat, they're only capturing 10% of Lyme cases. And that's, if you may have noticed, the incidence of Lyme suddenly jumped up by a factor of 10. They just said it was like 30,000, 33,000 a year. All of a sudden it went up to 350,000 when they made the admission that their criteria fails to capture so many cases. And that's right now we're at over 400,000 cases per year. And that a lot of people think that's an underestimation.

Yeah. Your book mentions 427,000 new cases a year, which you contextualize as being twice as large a number in comparison to breast cancer. And yet I, you also talked about the almost lack of funding from NIH. I forget the number, was it $30 million for Lyme disease annually. And yet, in your mind, it is a huge problem in this country. And I think, Dana, that you indicated that in your case, it wasn't just Lyme. It was Lyme in addition to another organism. You know, until I read your book, we would call those co-infections. But I think, Stephen, you made the point that these other types of infections can be just as aggressive, if not more. And may exist in an individual even in the absence of Lyme disease. So, you know, it further takes us off the scent, off the trail of trying to track this down.

Right. I had both. I mean, I had Lyme when I was, you know, when I was younger, and I'm not going to minimize it or maximize it, just it is what it is. It was a crappy kind of stubborn thing. It responded, in my case, relatively easily to antibiotics, and it relapsed quite a lot of times. So it was stubborn, but it was treatable. When I had this second illness, it was not Lyme. It was not spread by a tick. It was spread by spiders. And it was very difficult to treat and, and almost deadly.

I think, Stephen, where we are with this, it sort of has a bit of nuance towards the mold, so-called mold issue that not everybody wants to embrace the fact that this is actually happening, that it's a real thing. And interestingly, in your book, you describe how having an underlying infection like Lyme might make you more reactive and responsive negatively towards the toxins that are given out by mold, the mycotoxins. So do you really think that this, this may be what's going on in those individuals? And those people who have these mold reactions should have a really in-depth workup for some underlying infection.

I mean, there is published evidence that mycotoxins induce a type 2 immune response, which is immune suppressive. So For the people who are not so medical who follow you, they induce a type of immune response that is abnormal, that's usually seen with things like allergies or with parasites. The overall net sum of this immune response is that it does suppress the immune system and can bring out other latent and dormant infections. I've had so many patients who've been treated and felt well for years and years and years. Case in point, one of them not too long ago got a job, a young person, in a moldy building in New York City and relapsed. That was his story when he came back to see me. me that he was fine for something like 5 years, gets this job in this wet, damp building, and boom, it's all back. So I don't think in his case it was primarily due to mold, but I think it was secondarily due to mold from the exposure, just taxing his immune response.

In the book, you talk about how doctors tend to revert to governmental guidelines in terms of their treatment protocols, and they really want to toe the line. But you really indicate, Stephen, that the governmental guidelines are incredibly obsolete. Why is that?

So many of these guidelines are written by doctors who don't even treat the illness. I mean, in case in point, in the Lyme treatment guidelines, they used to— on my PowerPoint presentations, they used to— Lyme was a reportable condition in many of the places that these doctors practice, so I could find out how many cases they actually diagnosed per year, and in one major teaching center that was responsible for writing One of the guidelines, they diagnosed 20 cases of Lyme per year, or at least that's what they reported to the state. So, I was like, 20 cases of Lyme per year, I treat that in 2 days. So, it is this weird, interesting situation where the people who are not actually practicing and seeing these patients are the ones who are telling other people how to do it. And you say, well, they say that long-term antimicrobial therapy doesn't work and this and that. You have to ask the question, how would they even know? Not only do they treat many patients at all, but certainly they never treat them with longer courses of medicines. So it's a very much weird situation where the people who really aren't qualified to be teaching are the ones who are laying down the rules.

Dana, in your book, you talk about Chris Christopherson and how he was diagnosed with Alzheimer's. Run us through that story because I think it's really very interesting.

So Chris had about a 30-year history with fibromyalgia. So he had— he was on a movie set where he was literally, as part of the movie, dragged through the woods, and all of his symptoms seemed to come on and begin at that point, right after that incident. So he went on to have a pacemaker put in, severe joint pain, severe depression, and it was all of these symptoms added up. Oh, extremely bad fibromyalgia, like he couldn't really sit, and he was in chronic severe pain. He was on all kinds of medications that made him feel even worse. And then when he was about 80 years old, and they had taken him to lots and lots of doctors, nobody ever thought to look for the root cause. And of course, this is Kris Kristofferson. He could afford to go to any doctor he wanted and do any treatment he wanted, and nobody had any answers for him. So like, it's amazing to me that even great privilege doesn't afford you the diagnosis early. It doesn't at all. So He had this integrative doctor that he saw in Malibu that was just working him up. They weren't even necessarily asking for root cause. He already had Alzheimer's. He was on Alzheimer's medications at that point. The doctor said, I think he has Lyme disease. He did test him. He gave him a better test than the average at a lab called Igenex. Came up positive. He started getting treated. By the way, he had been sent home to die, so he was diagnosed with Alzheimer's. He had to leave his career of being on the road all the time and everything that he loved. He— for 2 years. And then he gets this diagnosis. He starts antibiotics and within 30 days, as his wife puts it, the son of a bitch was back. Like the light was back in his eyes. He was himself again. I mean, she said like she was just crying all the time because he would come out of an airport bathroom, where am I? I don't know what city I'm in. And she said it was absolutely crushing, soul-crushing to see. He was like a Rhodes Scholar. He's a brilliant, brilliant person and a funny person and he had lost every piece of who he was until he started antibiotics. So, and it didn't even take that much to start bringing him back. And actually, Steve and I were, uh, had an awesome time right before the pandemic. He was on tour and he played New York City, and we both went and hung out with him for a long time backstage. And he's amazing. Like, he's a new person. I'm not going to say he's perfect. He's not perfect, but he's He's really, really incredibly better and he shocked everyone. He's not on any of the Alzheimer's drugs anymore, by the way, I should say that.

Which I think I'll go down saying that I'm very happy, even if he had Alzheimer's, that he's now not on the Alzheimer's drugs. Interesting study that came out of University of Louisiana, I think it was, by a Dr. Kennedy demonstrated that those people taking the so-called cholinesterase inhibitor drugs for Alzheimer's actually have cognitive decline at a greater rate in comparison to those who are not on the drugs, just as an aside.

Wow.

Yeah, it's the way of the world. That said, was there— had he lived in the Northeast?

He hadn't. He lived in California and Hawaii, and Hawaii, they say there's no Lyme in Hawaii. There are other things, and I'm sure there is Lyme in Hawaii. It's just not been reported because I've certainly heard from patients who have never left the island who have Lyme, so— or there's congenital Lyme, so that's a whole other story. But no, he did not ever live on the East Coast to my knowledge. And when he was shooting this movie, I'm not really sure where it was, but he lived in Malibu. And by the way, ticks and Lyme are all over LA and all over California. Again, another piece of misinformation that we should clear up for your listeners.

Well, that's why I brought it up, because in the book, that's one of the myths that it's only in the Northeast, it's only in Lyme, Connecticut. And if you don't live there, never been there, then everything's fine. You've got to find another cause. But even beyond Lyme itself, and even beyond the ticks itself, there are other vectors that can transmit beyond that specific Ixodes damini tick that can— that was classically described as being the one that carries Lyme disease. So there's a lot of opportunities here for people to become infected, not just with the Lyme organism, but with others to have these kinds of chronic situations. Stephen, you talk in the book about an individual who was diagnosed with ALS, Lou Gehrig's disease. Interesting, I didn't know this, that Lou Gehrig himself, for whom the disease is followed eponymously, had a house in Lyme, Connecticut. That's kind of interesting. But that this individual was ultimately treated with antibiotics and at least stabilized. So do you have a sense that there are Do you think there are some patients out there who've been given this diagnosis who may in fact be suffering from an underlying infection?

I do. I think ALS and the neurodegenerative illnesses are complicated, and a lot of times they're among the most refractory disease states to treat. But in my experience, I've gotten about 15 to 20% of them to have a good improvement and another 50 or so percent to stabilize their progression and stop progressing. Interesting you mentioned about him having a house in Lyme, Connecticut, because he also had a house Near where I grew up, and there's a park right next to the house. Big warning signs about ticks and Lyme, ironically. Yes. So,

well, that said, there was a push years ago for Lyme vax for immunization. So, Stephen, where are we with that and why is it not getting as much attention as it used to?

Well, the Lyme vaccine was taken off the market after a couple years. It was a big controversy about it because patients were getting ill The question is, a weird thing happened around the time of the vaccine. There's a lot of published literature from academic doctors saying that Lyme was hard to get rid of before the vaccine came out. There's a lot of data showing that the Lyme tests were insensitive and a lot of people had Lyme with negative blood tests. Then all of a sudden, in the year before the vaccine came out, everybody changed their minds. All of a sudden, Lyme was very easy to get rid of and the blood tests were now perfect, whereas they were horrible before. It was an awful coincidence. But in terms of getting a vaccine put forth, you had to have a situation where it was black and white because if the vaccine was given to animals that had Lyme in them, the animals could get sicker. And this is the weird part of the story that people don't understand, that many of us harbor these infections within us and we don't get sick. And if something throws off your immune system, I mean, look at COVID, what's happening with long COVID patients now. There are a lot of possibilities about why 1/3 of COVID patients are developing chronic symptoms. One plausible explanation is that they still have the virus in them. There's some accumulating data for that. But, I'm hearing patients from my office now. We just heard from a doctor. We're going to get him in as a patient. And, he really seems like he has Bartonella flared up after having had COVID. And, we're just hearing lots and lots of reports of this from all over that latent infections are being stirred up from COVID And, there's actually— they just published some data with that with Epstein-Barr.

Well, I think you bring up a very good point, and that is that that it's not just the disease that a person has, but who is the person who has the disease? In other words, what might the characteristics of that individual be, be it genetic, be it related to the microbiome, be it related to lifestyle, that may then predispose for bad outcome versus good outcome? We've certainly seen that manifest quite obviously in COVID. But, you know, as an example, we've known for probably about 18 years that there is a colocalization in the brain with herpes simplex virus type 1 antibodies against herpes simplex virus type 1 and a beta amyloid plaque. That's work from Oxford, Dr. Ruth Itzaki. And yet doesn't seem to be as much of an issue except in those individuals who carry the so-called predisposition genes for Alzheimer's, which are the APOE4 alleles. That combination seems to, you know, be what's related then to manifesting And here we have another example of an infection underlying ultimate manifestation as a disease that carries somebody's name and needs to be treated with a specific, one specific drug. You mentioned a statistic in the book that talks about, I think it's 4,000 individuals with Parkinson's, multisystem atrophy, multiple sclerosis, that of those, 20% of that 4,000 actually had underlying Lyme. That's pretty profound. To the extent that one would think, Stephen, that anyone who came in and was ultimately diagnosed as having Parkinson's or multisystem atrophy or any of the, or MS should have at least an evaluation for one of these underlying infectious agents.

Absolutely. I mean, MS, multisystem atrophy is very tricky and so is Parkinson's. The neurodegenerative ones, for whatever reason, a lot, I think there's a really comp— there's so many pathways to neurodegeneration as you're an expert in it. But, in terms of MS, not to be overly optimistic, but for relapsing-remitting MS patients, I get almost all of them better, like 95+% better. I've been doing it for years and I've been in practice 25 years and treated many, many hundreds of MS patients successfully. And, there's good, good data going back over 100 years that spirochetes have been found in the brains and spinal fluid of MS patients. Yeah. They've done animal studies where they've taken spinal fluid and brain tissue from MS patients who've either donated or passed away, and they put them into little animals. The animals got progressive neurodegenerative illness and MS. And there's also data with antibiotic studies with MS showing that tetracycline-class antibiotics improve MS outcomes, not even just on its own, but even over and above betaserone. When betaserone is failing, the addition of doxycycline helps out. So why they're not doing like these large randomized controlled trials with, you know, innocuous antibiotics that cross blood-brain barrier could have really good impacts against multiple sclerosis. I think it's a, speaks to the, the financial state of affairs. I mean, they're not, they don't have any shiny new patents. They're not expensive drugs. There's no drug company interest in these medicines.

I have to tell you a story. Many, many years ago when I was taking my neurology board, so that would've been a long time ago, I think 1987, they presented a case me of a man who had a very puzzling constellation of symptoms. And I was fresh outta residency. But what had caught my attention was in addition to his neurological issues, he had joint pain and he had had a rash earlier on. And I had, for whatever reason, just studied something called Banworth syndrome, which now is called Lyme disease. And I began to describe that. And here I am, they're examining me. And I said, here's what might be going on. I just reviewed this article, and I think it was New England Journal of Medicine. These guys were there to see whether I was to be board certified or not, and they're, you know, it was kind of a one-way street. And when we started talking about this, they became really interested. They were young guys too. I mean, maybe obviously a few years older than I, to the extent that they followed me out to the car to keep asking me about this thing called Banwarth syndrome because they hadn't heard of it. And my My wife was driving the car, rental car, we were in New York, and picked me up. And she watched these guys following me, kind of not heckling me, but asking me these questions about it, about what they should do to treat, etc. And I wasn't really sure, you know, I had read one article. And she said, well, did it— how did it go? And I said, I don't really know. I mean, if that's a good thing or a bad thing that they followed me out to the car. But anyway, it really really impressed upon me even back then this notion that, you know, we really want to pigeonhole things, that Alzheimer's is this, ALS is that, and then, you know, we have to name things. There in your book you talk about— I'm not going to get it right— but the post-Lyme disease syndrome whereby people get their 21 days, they still have issues, so they have this bizarre syndrome that follows the complete eradication of Lyme in their body, and there must be something else going on. So they call it— you can correct me, of course— this post-Lyme disease infection syndrome or whatever it is. So how did you— how do you, Stephen, how do you counter that when people are given this issue that, look, you should be better, there must be something else going on?

I think to characterize this thing as a Naming post-infectious syndromes is some of the most dangerous stuff that doctors can do. It's true. Doctors love to name things. And some, you know, we kid ourselves. We think that when we put a name to it, aha, now it's a diagnosis. But when I got that label of rheumatoid arthritis, I was no closer to finding out what was causing the rheumatoid arthritis before they gave me the label. So when they use the label post-treatment Lyme disease syndrome, like Dana said, on day 20, she still got active Lyme. On day 22, all of a sudden it's post-treatment Lyme disease syndrome. It becomes, you know, to the ridiculous. And it becomes even more ridiculous, like with Lyme, you know, that's the, that's the one chronic infection that we have so much data on. It's the one that everyone has heard about. So of course we do a deep dive about that in the book. And then we go into this whole multitude of other infections. But just with simple Lyme, they can't, you know, they can't kill it in the test tube with the antibiotics that are purported to kill it in the body. This is a really fastidious organism. It's really, really hard to isolate from animals and people that have the infection. So if you give a dog Lyme and then you wait 30 days and then take blood from the dog, you don't find anything. So if you don't find it before you treat the dog, you don't find it after, how do you prove it? You know, they cut the dogs up, they cut the horses up, the monkeys, the mice, and all the animal studies they're finding we're not curing it. And they can find it in the deep tissues hiding out. But the take-home message is they don't find it in the blood easily. And, you know, people don't get brain biopsies to diagnose their Lyme. They get a blood test. And the blood tests aren't accurate.

We, as neurologists, have known about and see quite a bit this thing called PANDAS, where children develop this neuropsychiatric issue fairly acutely after having a streptococcal infection. And in your book, you describe that this can happen from Lyme disease, but yet it's not as— certainly not recognized.

More so of a thing with Bartonella, in my experience. Yeah. And, you know, so it's— unless parents have gone through this, I mean, everyone should know about this and look for the warning signs in their kids because it's like a light switch sometimes goes off. It's frequently associated with OCD and movement disorders. Some kids get diagnosed with Tourette's, and sometimes it's associated narcolepsy. It has this kind of syndrome of nuanced obsessiveness, impulsivity. They're really like almost overnight personality changes. And some of these cases are really, really hard to treat. Fortunately, I've gotten most of them better, but some are just refractory, very, very difficult, super challenging, and it takes a village to get these kids better sometimes.

So we talked earlier about diagnosis, and, you know, where do we stand today? You mentioned one test, Igenex test, but where do we stand today? A patient comes in and a doctor— maybe this is for the physicians watching this broadcast— a doctor is puzzled and feels that perhaps there is some form of underlying infection, What does she or he do at that point to try to get as much information as possible?

I mean, it's, I check a whole panel of chronic infections. We check for, I send my, there's only 2 blood tests that I do sendouts for. And I send out to Stony Brook for my Lyme antibody testing. I send out to a lab called Galaxy for Bartonella antibody testing, cuz they're both, I think, really good quality testing. And then I do everything else in network. I check for the many chronic infections. I check for Anaplasma ehrlichii, Rickettsia. I check for other kind of species of Borrelia, like there's one called Borrelia miyamotoi. I check for brucellosis and tularemia and Q fever, and a list of parasitic infections that are incredibly common in our population. We're taught in med school that parasitic infections in the U.S. aren't anything to worry about. It's true; they usually don't make us sick. But there's a body of evidence showing that chronic parasitic infections, it's like when you say mold exposure, it induces that same abnormal immune response. It's a Th2 immune response and it's immune suppressive. And there's data that if people, let's say, have tuberculosis and they have a parasite that's not even causing a bad, you know, problem with the parasite, that can make it harder to get over the TB 'cause it's an immunosuppressive thing.

One of the tests that's used for other types of infections is PCR, polymerase chain reaction. Why does CDC not necessarily Why are they not supportive of using PCR for Lyme?

There's actually a video from somebody, I think, I think she's from the NIH. Dana was, you know what I'm talking about, right?

Yes. Christina Nelson.

Well, anyways, she's, she has a video out there specifically saying not to use PCR. It's a very bizarre situation cuz PCR is fundamental to, you know, so many chronic infections. And the claim was that, you know, you can have false positives, but this is not a new technology. This is a, what it's 30 years old at this point. And yes, you could have false positives for anything, but then take out PCRs for HIV and hepatitis C and all the things that they use PCR for. It's just weird. Lyme is held to this double standard. Anything that comes either before the word Lyme or after the word Lyme is just mired down in controversy for no good reason. They've isolated the Lyme bacteria from patients with chronic Lyme after literally 2 years of antibiotics. And they're still saying— alive from humans, and they're still saying it doesn't exist. And, you know, these patients are by far the most marginalized, disenfranchised population in medicine today.

I didn't see in the book discussion of this to any significant degree, but one of the things that was talked about, that has been talked about over the years, Stephen, to you, is that somehow Lyme can go underground and remain dormant, be— and remain undetectable, and then resurface or become active in the future. At some point. How does that, does that really work? And if so, can you walk us through that?

Well, almost all of these infections can set up chronic infection and not cause symptoms, just like someone can ever get a cold sore and maybe it will contribute to dementia 50 years later. It's similar with Lyme and other chronic infections. They don't have to cause symptoms. I had many, many patients before COVID came out where they would get a really bad flu and they would never seem to recover. Then they came up with a chronic Chronic fatigue type presentation. It's very much like long COVID. I've seen the same thing with my— after mono cases and dengue fever. And I've even seen, believe it or not, after significant traumas, particularly head traumas, which tend to be immune suppressive, that— and I've seen things where people take prednisone, like they were fine, they'd get around on prednisone, all of a sudden they have chronic illness after that. So you get this recurring theme of something that's setting off the immunologic apple cart. So yes, Lyme can cause symptoms and go away on its own and then come back later, just like syphilis. You know, famously does. It's just this sneaky, weird infection. In terms of finding it, really, at the earliest stages, people can get a positive ELISA. Then, if they don't develop Lyme arthritis, which again is a minority of patients, that test goes negative pretty darn quick. There's published data where the ELISA is positive. Again, the screening test goes negative, and then they've actually isolated the bacteria from people with ongoing illness.

So Dana, to you, aside from your wonderful book, what would you— how do you advise people in terms of where can they go? Where do they turn if they need more information?

There are doctors that, like integrative doctors, for example, like the one who diagnosed Kris Kristofferson, that can actually sort this out. Maybe they're not the best at treating, and actually he sent Kris to another doctor who actually treats Lyme specifically. to continue the treatment after the initial antibiotics. But I like ILADS for, I mean, you know, ILADS, ILADS.org, can direct you to physicians who have been specifically trained for vector-borne disease treatment. These doctors are across many disciplines, so they're not just, and some of them treat other things too. And I would just as many studies, as much information to their doctors. There's a lot of dogma out there, and it's really hard to get doctors to listen, but I do— I did go back to a few doctors and brought a bunch of studies. Actually, the oncologist, I went back and I talked to the radiologist who did my scan when I had the breast swelling. She had no idea that Bartonella could cause breast swelling. Really? there was a history, and Steve can comment more about this, but where Bartonella mimics breast cancer. It's just right on PubMed. I sat in her office and showed her this. She was blown away. She was a young radiologist, and she said, I will remember this now for the rest of my career. I'm highly in favor of patients trying to educate open-minded doctors. It is not easy. Many doctors are not open-minded, but we can do it. There's one more thing. I don't want to forget to say this. When you talked about Parkinson's before, just the other day, Steve and I received a video from a retired Mayo-trained rheumatologist named Dr. Al Miller, who is a friend to the community. His daughter-in-law, you probably read this in the book, had ALS at 43. He said she went to Mayo Clinic, she went to Mass General, she went to all the top hospitals. She went to the Cleveland Clinic as well. They just said, we're really sorry, but she has ALS and that's it, and also MS. He said, this cannot be. She was young and healthy and perfect. What could this be? He started digging into the literature himself, discovered that infections— Lyme— can cause these 2 syndromes, and he started treating her himself with antibiotics. She got a lot better and she lived for 6 years. She was, she was given a death sentence. I don't remember if it was a year or 2 years, but it was not longer than that. And she died from something else unrelated 6 years later. The other thing that I don't want to forget to tell you is that Dr. Miller sent us this video of Michael J. Fox on David Letterman who— I don't know if you can even find this on the internet anymore, but I'd love to share it with you where he talks about getting Lyme. He was really sick and he had to cancel his appearance on the show from the prior week and they were Like, oh God, Lyme could be so bad, blah, blah. This is from like 1998 and then he was diagnosed with Parkinson's. There was also a cluster on a movie that he was working on of 7 people including him who got Parkinson's. I just think we have to really look at this for what it could be and look at the possible implications of that.

In neurology, when you're talking about Parkinson's and let's say Alzheimer's, ALS, there's always been this real rejection of the notion that there could be an infectious etiology. And yet we know that the brain is not sterile, that there is herpes simplex virus type 1, type 6, chlamydia pneumoniae, which has been absolutely associated with MS, for example. So it's nothing, it's not sterile. And I think it really gets back to Stephen, what you were talking about, we were talking about earlier, and that is the host response. Which can be then modified by yet a new infection, a new exposure that is very dysregulating as it relates to the immune system. And, you know, I just think, you know, people tend to be down on what they're not up on. And that, I will say, coupled with old habits die hard. I can certainly tell you in my career that day after day, there was great frustration in, you know, communicating with doctors about what we were doing with their patients, why it was working. I'll tell you one quick story. Woman had intractable headaches 30 years on Requiring narcotics at times. Other things kind of clued me in that she was suffering from gluten sensitivity. Took her off gluten-containing foods, though she did not have celiac disease. And what do you know? Her headaches went away completely. She goes back to her gastroenterologist who performs an upper endoscopy and says, you do not have celiac disease. Get back on gluten. You need it. And yet her headaches were now gone. She she decided she wouldn't go back on gluten because she was feeling so much better. I phoned the gastroenterologist. I said her headaches are gone, and I basically was hung up on. So I know the frustration that you both both must feel, but I want to thank you for stepping up. This book's going to go a long way towards raising an incredible level of awareness that this is smoldering in the background, and we have to admit. That a 3-week course of doxy is not going to be good enough, that other infectious agents may well be at play, and that, you know, as you described in the book, being the great imitator. And we used to say that about syphilis, another spirochete, but now I think let's let Lyme disease take on that name. So I want to thank you both. I think it's bold that you wrote the book that you did, and it's going to help an incredibly large number of people. Well, I hope you enjoyed the program today. What an interesting thesis. That underlying infection, chronic infection, can manifest as so many of these autoimmune conditions that are really so much a part of our lives these days. So interesting information. There's great information in this book if you are one of these individuals, not only about how to achieve an appropriate diagnosis, but even more importantly, what you can do to help yourself. I hope you found the program interesting today. I know I did. Thanks for joining me. I'll be back soon.